Any experience with Colobomas of the eyes or other vision issues?

heedy07 · November 2011

Hi. My 3 month old DS was just diagnosed with retinal-choroidal colobomas in both eyes. He doesn't have much vision in the right, and they are uncertain how much he will have in the left. I am just trying to come to terms with everything that has happened in the past couple of days. I know that it could be much worse, but it still so hard to know that there is something wrong with your child that will impact the rest of their life. He also has to have a brain scan and meet with a geneticist to rule out any brain involvement and/or genetic disorders.

I have contacted the local early intervention people. Is that the next step (besides all of the testing that the Dr. is reccommending) that I should be taking? I would really like to give him as much of an advantage as possible.

TIA for reading this. I think I am still somewhat in shock right now.

BUmama · November 2011

Calling EI is definitely the right thing to do. A friend of mine has a little boy who was born with very little vision and they helped to teach him braille and to work with what vision he has.

My daughter has vision issues, but nothing this severe, so outside of additional testing, all I can suggest is possibly getting a second opinion.

Good luck with everything.

thefuturemrskudla · November 2011

Hi,

Congratulations of your son.

Colobomas are extremely common in CHARGE Syndrome (I'm not saying your son has this), so I suggest visting the CHARGE Syndrome Foundation website (www.chargesyndrome.org) for information, and also joining the lyahoo group. You'll be able to get a lot of advice from parents and people w/CHARGE about vision and colobomas,

heedy07 · November 2011

Thank you for your input. This is just all so overwhelming right now Sad

CABunny · November 2011

I have a 5 1/2 year old son with Coloboma in his left eye. He was diagnosed around the same age as your DS. I was in shock as well and felt a lot of guilt (like somehow I caused this - not true). We were told that his vision would be really poor and his depth perception would be affected, but that he would adjust since it's a condition that he was born with and not something that happened later in life.

It was kind of annoying to deal with stranger comments on how his eye looks, especially before he got his glasses at age 3, but I just gave the shortest explanation I could come up with. Once he got the glasses, I think it became less noticeable. The glasses are just to protect his right eye, by the way, since his vision can't be corrected. We also ruled out genetic disorders.

He was a bit of a late walker and when he did learn to walk, he was very cautious (a blessing, actually) and whenever he approached a change in texture (like carpet to hardwood), he would bend down and feel the ground because he couldn't tell if it was a step or not and he didn't want to fall. He has almost totally adapted though, and now he only has issues if he's walking on a staircase or steps that he's never walked on before.

We were told to expect "lazy eye", but it's been five years and that hasn't happened. Also, DS is at an age now that I can "test" him on what he sees and he can see a lot more that we originally thought.

Sorry that got long! ((hugs)) as you get through the shock.

MummyGruetzie · November 2011

First off congrats on your son! I'm sorry that you're having to deal with this right now. Out of all of the things we've faced with DD (trach, g-tube, lots of other medical issues) her sensory losses have by far been the scariest thing for our family at times. But we've learn that she's so much more capable than you'd ever imagine.

DD has colobomas as well as several other vision and hearing issues that label her as "Deaf-Blind". (Other vision issues include: nystagmus, severe myopia, nerve damage, amblyopia, hypo-pigmentation, photo-phobia, etc.) Functionally for her, at age 3 the colobomas make her look like she is reading things, if that makes any sense... Imagine she's looking at a ball. She'll start at the top left and go to the right, then move back to the left and go to the middle right, then to the bottom left and bottom right. She has to move back and forth to look at something. Combined with her other vision issues this is our best case scenario when she's doing this. The majority of the time her eyes are too "tired" to focus very much on objects. She'll keep her eyes closed for long periods of time or her eyes will roll back in her head (super scary until we learned it was normal!).

Contacting EI is a great first step. Ours didn't have an vision teachers available for quite some time since its a much less common request than say Speech, OT, or PT. If you have trouble getting consistent services, you can request a "Functional Vision Assessment" or a one time consult for ideas on how to stimulate your son's vision. The big thing to know is that unless he is COMPLETELY blind, you can absolutely stimulate your son's vision and teach him to use it to the best of HIS ability. This is something that a lot of doctors gloss over, but the vision teacher should really be big on. Aside from braille (which your son may or may not need depending on where his colobomas are), your son will probably be exposed to a light box and tons of toys that you can learn with through that, your vision teacher should also talk to you about what kinds of specific things you should say to your son to help him compensate for not being able to see clearly (there's a lot of focus on teaching direction early on in children with vision loss). They should also be able to help you with Orientation and Mobility as your son begins to move around a bit more--even now there's stuff that you can begin with.

With you EI request, I'd also include an OT or Speech assessment to address feeding issues if you are having any. This is common for children with vision impairments, both b/c of the lack of vision and sensory information being thrown off. . . Aside from EI, I'd contact the state's school for the Blind. They'll likely have a seperate EI program that is specifically for children who are blind. Even if you can't go regularly, it'd be great to be in touch with other parents going through what you are and perhaps be able to set up play-dates. Our school is 3-4 hours away so this is something I've really been disappointed to miss out on. My state also has a separate state Department for the Blind and Vision Impaired. They have regional educational consultants who will come to your house once a quarter. They do a Functional Vision Assessment, put you in touch with resources, and set you up with assessing the APH quota funds or you can directly ask your EI to help you get this information. I'd also request info on any parents groups since that's usually how to get the inside scoop on local resources.

The biggest thing to focus on right now in terms of helping your son overcome this, is just treating him like you would any other baby. Giving him tons of snuggles and talking talking talking. Especially explaining to him what you are seeing and giving little pats and verbal heads up/warnings before you pick him up or move him so that he doesn't get startled. Ie. I always rub DDs crib rail, then pat her mattress, then pull under her arms like a fake pick up 3 times, then I sign "Mommy pick up". And finally pick her up. I want to give her the same info she'd have if she could see or hear me. You'll find your own routines and they will become second nature to the point where when others come over you'll wonder why they don't "just do it". Being a Mom in general is such an instinctive thing and in time you'll learn the ways to help your son meet his needs--through your own trial and error and through the help of others.

A wonderful website that I love is: www.wonderbaby.org Its from Perkins. Perkins itself also has some really valuable webcasts. https://www.perkins.org/resources/webcasts/ Finally--your son's doctor may or may not want him to wear glasses. Usually they don't particularly help the coloboma since its really just putting glass on top of a hole. But some doctors want them to protect the eye in cases where its larger. We have miraflex glasses. They're rubber, super safe, and so stinking cute and the company is great to deal with.

I wish you absolutely the best with your new baby boy. Please let us know if you have any specific questions or need an ear. There are a few others on the board that also have children with vision issues. Not regularly, but they usually pipe up after a post. And PP is right, the CHARGE community is fabulous for information on children with multiple medical needs. I believe there is a yahoo group specifically for people with coloboma. Though, I'm not a part of it, so I can't tell you what its like...

Congrats again!

heedy07 · November 2011

Thank you so much for all the info and encouragement. I am not sure if our EI has a vision person available or not? They are just getting the ball rolling this week, so I will find out soon.

They are planning to put him in glasses in 6 months from now to protect the lesser affected eye. My dad actually has a prosthetic right eye from an accident and glaucoma in his left eye, so I know that he will be a great resource for my son as well. They said he may or may not develop a lazy eye in the right, and if he did, they would surgically straighten it.

I will definitely be looking into the resources that you all provided and taking your suggestions to heart. We will just do our best to give him the best life possible and help him live up to his full potential.

Again, thank you so very much!

emberlee3 · November 2011

I was born with a cataract in my R eye that was not detected until I was 10 months old. The lens had to be removed completely and I have a defect in my iris. I have very poor vision in my R eye, basically only peripheral vision, due to the severe amblyopia that developed because of late detection. I had strabismus surgery at age 5, which was purely cosmetic. It's wonderful that your child has been diagnosed so early, it gives him the best chance for optimizing his vision.

One thing that helped me as a child was always wearing sunglasses outside. My R eye is very sensitive to light because the pupil does not constrict. This would also be true with coloboma, I think. Good luck and keep us posted.

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